I come here nearly every day to write something and almost never end up posting anything. Sometimes, I write for hours and nothing I say is what I want to say so I don’t post it. I feel I’m better for having written it. I guess I needed to get it out. But it’s not what I wanted or needed to say to someone else to read. Sometimes, I start typing and realize I don’t have a clue what I want to talk about. Other times, I have so much to say, I have trouble focusing my thoughts in a direction to write about. Any way it goes, I end up not putting up a new post.

Tonight, I spent a good portion of my evening with my head over a trashcan, trying to keep the contents of my stomach on the inside of my body and not the outside. I was partially successful, and that’s all you likely need or want to know about that. Zofran didn’t rescue me this time.

I don’t know why it happens sometimes. I don’t now what causes it. I don’t know how to make it stop, and I hate it. When things aren’t spewing out that end of me, ti’s not unusual for them to be spewing out the other end of me. This is the lovely side effects of being chronically ill and some of the medications I’m taking.

Over the past week, my diuretic seemed to have stopped working, so I had some fluid weight gain. It’s always miserable when that happens, because my saturations go down. That makes it hard to breathe and being hard to breathe sort of sucks rocks.

I told the doc in my appointment that I have learned how to live with pain, but I still haven’t quite figured out the trick about living without breathing yet.

I’m working on it.

I’ve got some new developments going on, but I can’t publicly talk about them yet. When I can, I will be sharing them here. If I share them now, it might affect my timeline if my current docs and such were to see what I wrote. I might just be being paranoid, but I’d rather not take my chances. I hope you’ll check back late next week to read about those developments though.

My kidney function on my last blood work was good. That’s always a relief when I’m taking such a high dose of such strong diuretics. The rest of my blood work all looked ‘normal for me’. As we’ve learned, Michy’s got her own version of ‘normal’ going on.

I learned at my last visit that my condition is likely more severe than *I* thought it was. But then I thought, you know, that doesn’t change how I have to live, how I’ve been living or anything I have to do… all that’s change is what I know about it, so what’s there really to be upset about? It’s still the same sucky disease and conditions, so why let it bum me out?

Well, the why it bummed me out is likely because I was stupid and sort of accidentally went off my antidepressants, and from the way I responded, apparently, it wasn’t a good time to do that. For three days now, I’ve been staring at walls. It’s what I do when I’m depressed. I sort of just… you know… stare.. at walls, for hours. Without thinking, really. Without… doing much of anything, really.

Depression sucks.

I’m working on that too. Been back on antidepressants for two days. These ones really work well for me. Haven’t ever had any problems or any noticeable side effects from them except for feeling better and having deeper emotions. I’m still bummed about things on the antidepressants, but they don’t seem so bleak and hopeless. I still get sad and cry and get angry when I’m on them, but it lasts for a shorter period of time and is easier to get myself out of those moments into other emotions. when I’m not on them, though, I tend to get triggered and just keep going down and down until finally there’s that point where numbness kicks in and everything just stops. Oh, God, I’ve rather be in deep, hair and clothes tearing grief than to be numb. I’d rather be in tremendous physical pain than be numb. I’d rather ITCH than be numb, and I gotta tell you something, there’s not much worse than itching uncontrollably. I know whereof I speak.

So stick with me. When I go radio silent, sometimes, it’s because I need someone else to reach out to me… you can do that, any time, you know. Other times, it’s because I just don’t know what to say or how to say what’s going on with me inside.

I do know this business of being sick sort of sucks rocks on steroids… and I’ve had quite enough of it. But like I also told my doctor this week: I’m not anywhere near where I used to be before I got sick, and I don’t care what anyone says about my ‘chances’ or ‘odds’ or ‘numbers’, I’m not ever going to give up trying to gain back all I’ve lost. There’s no point in having lived through everything I should have died from if I give up now.

On a really positive note: I’ve joined an online support group of other CTEPH sufferers, and it’s been such a blessing to me. I’ve met some of the most amazing people, and all of them ‘understand’. They get it in a way no one else really can. I  know my FB friends mean well, and I love them for all the support they give me, the love, the encouragement–I’d be so lost without them–but at the same time, I realize they don’t always understand what I go through from my perspective, or I have to remember they won’t really recognize the terminology I know from medical stuff, or what the risks of this or that procedure are. When I talk to the folks in the support group, they not only know the terms or about the procedure, but many of them have already gone through it themselves! I’m the type who HAS to know what’s going to happen before it happens. I want to watch, see, hear and know what’s happening through the entire procedure or test or whatever. If I don’t know something, I’m terrified about what’s next. When I know, even if it’s bad, I don’t have to be scared.

Well, these people have helped me so much with feeling less anxious about things. They’ve understood when I’ve vented. More than that, they’ve shared their own stories–successes, failure, treatments and more–and I learn so much from reading their words and realizing they are just like me, how they feel, what they think, the things they fear. And in turn, I have some information sometimes for a newbie that can help them too, and I feel like I make a difference too, like these other folks make a difference for me.

And it was this blog right here that sort of indirectly led me to finding this support group. For that alone, this blog has done its job for me.

This is such a rare condition that, in the entire world, there’s only thousands of people–not even hundreds of thousands–with this condition. And of the ones they know about, only a handful correlatively have ever had the PTE surgery that I hope to be eligible for in the future. Without the internet, we would be quite isolated and alone. With the internet, we can share our stories, and most importantly share our treatments that work with one another. It’s like an ongoing, living, breathing (we hope to stay that way!) clinical trial of sorts. I think what doctors can learn from us all talking to one another would be immeasurable if someone would just come in and do the work! We’d all likely be quite eager to help out!

I”m finding so many similarities amongst us, and yet we’re all from different walks of life and ages and locations and races and ethnicities and weights and all other factors that might influence things medically. But I learned today alone that a whole lot of CTEPH patients were diagnosed, erroneously, with sleep apnea before they discovered the CTEPH. I already knew a lot of us had been diagnosed with asthma (I never was, but many, many were), only later to learn it never was asthma! I also learned that for those with sleep apnea or who use a positive airway pressure machine for any reason, most of the CTEPH patients can’t tolerate CPAP and have to be titrated on BiPAP instead. There are many other strong correlate and causative associations I’m seeing as patterns. I think a doctor with more knowledge on what to look for and the questions to ask would find there are even more similarities, from commonality in misdiagnoses, to commonality in the path to proper diagnosis and treatment, to working treatments desperate doctors tried or failed ones too (’cause failures can often teach as much or more than successes!)

Our support group and small corner of the world is a wealth of information to the right researcher or doctor… and we’re such a great bunch, I know tons of us would jump at the chance to further research so maybe this horrid condition can be prevented!

That would be so awesome! I just want to give a big shoutout to the CTEPH support group folks on  Facbook. You guys have been amazing to me. If anyone who reads my blog has CTEPH and wants to get into this group, message me and I’ll send you the link. These are very welcoming people–no cliques here, all warm, open and inviting souls who will laugh and cry with you, pray with and for you, and get pissed off with you and for you when you need it!

Anyway, enough for now. My head is pounding and I’m ready to call it a night… only 1am. A little early for me, actually.

I love and need you all!

Love and stuff,

Michy